Love and Chaos: The Paradox of Extreme Care

Month: April 2018

Yesterday I had the great privilege to be part of a rich and dynamic gathering of people interested in discussing care, disability, and faith. As part of that day I had the opportunity to share the early stages of my doctoral research exploring the interconnection between a mother and her child with disabilities. During my presentation I talked a little bit about my own interconnection with Matthew. So to begin the presentation I wanted an image that included Matthew and me. Not easy when you are the one who is usually behind the camera.

I ended up choosing the above image because, for me, it is likely the very beginning of this deeply complex and porous relationship I have with my son. But as the day progressed and presenters at times talked about care, personhood, life with disability, and the painful reality of euthanasia, my mind kept wandering back to this image. This image, for me, connects to so many of those challenges and issues. This picture tells many stories.

This photograph was taken in the middle of the night several days after Matthew was born. Matthew’s birth was complicated and involved both Matthew and I being ambulanced separately and at different times to a regional care facility about an hour away from our home. When this picture was taken I was still an inpatient recovering from a traumatic labour and delivery.

It was about two in the morning and my mind refused to “turn off”. While the days kept me busy with meetings about Matthew, the nights were times when my mind buzzed with the deeply concerning information my husband and I were receiving about our son. Unable to sleep I finally decided to leave my own hospital ward and walk to the NICU where my son was on life support. At this point I had been unable to hold or even touch Matthew. His medical status was far too fragile; his seizures far too severe. But in the quiet of the NICU night the nurse caring for Matthew decided that allowing me to hold my son would be good for both of us. It took quite some time to secure the many tubes connected to my son’s body within the blankets and transfer Matthew to me. Interestingly this is only one of two pictures of Matthew while on life support. I didn’t want to remember these days so I refused to allow pictures. The only other photo of my son on life support (below) is the one the medical transport team left with me before Matthew was rushed to MUMC. To this day I am still traumatized by that photo. Other women had their babies. I had a grainy polaroid of an infant a city away.

During yesterday’s conversations, both formally and informally, we explored the fact that babies with disabilities have their lives ended in utero, or at times shortly after birth. In the image of Matthew and me, Matthew is on a drug called vecuronium. This is a drug that paralyzes the body, including the diaphragm. At the time it was the only way to manage his seizures and create the space for his body and brain to begin to heal from what was called a “catastrophic birth injury”. What is significant about this is that if Matthew’s life support was turned off his death was inevitable. This fact was made clear to us by the medical team. And during these days we were repeatedly asked if we wished to discontinue his life support. Indeed we were told that many parents chose this option when faced with the reality of raising a severely disabled child. It was understandable and the team would not offer any judgment if we chose this option. My husband faltered during this time. I can’t blame him. A medical team was telling him his son was so complex that ending his life was an appropriate thing to consider. The idea that our son would never really “know” us as parents and would be unable to enter into relationships – as Matthew was described to us, was terrifying. What is life without relationships? How will I parent a child who cannot understand relationships? However, thankfully, at this stage of the story my mother bear was in full form. Discontinuing Matthew’s life support was not something open to discussion – a fact that I made clear to the team during those early days.

To be clear there were days when I would later question that decision. Black days when Matthew’s suffering seemed to challenge any suggestion of quality of life. But to suggest that Matthew, or children with profound intellectual impairment, do not enter into relationship is a dangerously ableist notion. The idea that this is an idea presented in the NICU when making life and death decisions is troubling. Matthew may not know I am his mother, but there is no doubt of a powerful relationship between us. A relationship that is so deeply interconnected that there are times that my ability to differentiate between his suffering and my own, or his joy and my own, is impossible. Further, to suggest that Matthew lives without relationships is ridiculous. Matthew enjoys a broad range of rich and mutually connected friendships. Yes, Matthew’s relationships may require more facilitation than “traditional” friendships, and Matthew may ask his friends, and our broader community, to think about friendship in new ways. But that is one of the great gifts of a friendship with Matthew – you are opened up to new ways of being in relationship with others.

I had not thought about these early days in a long time. It is amazing what one picture can do.

Yesterday my eldest son moved back home after completing his undergraduate degree. He is home for only a week before heading up north where he will work all summer. In the fall he will rejoin the household for a prolonged stay before pursuing graduate school a year or so down the road. As he joked during his recent graduation ceremony he plans to become an excellent stay-at-home-son in the interim.

There is no doubt the dynamics of our home have changed with my son’s return. With all three boys home – ages 17, 19, 21 – the house is messier, louder, busier, and we go through food at an alarming rate. Within hours of Robert’s return friends were congregating in the basement to watch a movie and soak in our hot tub. When Robert is around the TV is usually tuned to a sports channel so he doesn’t miss any scores. This morning I switched back to our large coffee maker since my eldest now is a coffee drinker. While he was away I was the only morning coffee person in our home so a two-cup carafe was fine. By mornings’ end I had scrambled eggs, flipped pancakes, mixed smoothies, sliced fruit, prepared oatmeal, and cooked bacon. I now need to go grocery shopping. At Costco. Because they have LARGE sizes. And clean the kitchen. I am worried this whole grocery shopping thing might become a daily event.

Our family is at that stage of life where the boys come and go. We have a shared care arrangement with Matthew’s group home so he is to and fro our home on a regular basis. Matthew is an integral party of the pandemonium in our home. The other two boys are back and forth with camp commitments, travel, school, jobs, and outings. I know that in a little over a year there is an excellent chance that all my boys may be spending more time away from home than at home. My youngest will be heading off to university for the first time and my eldest will likely be heading off to some form of graduate school. Both boys will be up north at camp this summer for stretches of time – with my eldest gone for four months. My youngest is part of a European exchange prior to leaving for camp. All this is a sign of things to come. I know that it isn’t too far off in the distance that there will be a time when my nest is rather empty.

But for the moment my nest is bursting with busy-ness, friends, sports, hockey sticks, running gear, gym bags, basketballs, noise, clutter, and very, very empty kitchen cupboards. And I am happy. So very, very happy.